Invisible Illness Awareness Week

Invisible Illness Awareness Week is September 10 – 16, 2012. It’s time to commiserate with those who have invisible illnesses like fibromyalgia, chronic fatigue symptom, lyme disease, and Dysautonomias such as POTS. If you have one of these pesky illnesses maybe it’s time to share your story to help educate others.

Those of us who have an invisible disease, in my case fibromyalgia, find ourselves in sometimes an unusual and uncomfortable situation. Even though there’s tons of information available on fibromyalgia and other invisible diseases people and physicians alike will look at us like we’re totally healthy and just are looking for sympathy, don’t want to work, or maybe looking for drugs. They can’t see it so it’s not there. This is one of the main reasons Invisible Illness Awareness Week is so important.

I would like to defer to a woman in New Zealand, her name is Nix, who has written a couple really good articles on how she deals with her illnesses (notice the plural) and the definition she has compiled on what chronic pain is. I think she has done a wonderful job of putting it into terms most people can understand with links to the terminology for further information. Visit her blogs at painmonth.com. She makes my problems seem miniscule in some ways compared to hers. Sometimes we need to look at someone else to realize how not-so-bad-off we are.

Yes, I hurt. No, I can’t think straight. My muscles are screaming – Good Grief Don’t Touch Me! I can’t go to the car show today I hurt, my stomach is upset, I haven’t slept in three nights, I can’t think, and on and on the symptoms go. Does this sound familiar? If you have any of the invisible diseases that give chronic pain it probably does.

It’s when all of these things are happening, sometimes all at once, you wonder if anyone else is like this. For those new to an invisible illness, yes there are millions of us out there that feel this way. Many of us have more than one illness to deal with at a time. The combination of chronic fatigue symptom and fibromyalgia is quite common as is fibromyalgia and lyme disease. Combinations of other invisible diseases are common too but these are two that have appeared in several articles and comments that I have read.

Invisible Illness Awareness Week is a good time to remind your doctor, family and friends that what you have is real. Even if your symptoms haven’t been diagnosed as an invisible illness keep talking to your doctor, family and friends until they realize that you’re not faking and that you indeed do need help. If your employer isn’t aware of your situation now might be a good time to fill them in so they know what’s going on when you have a bad day. It’s the only way that he or she will be able to understand when or if you can’t do something.

Most employers are understanding and will help create surroundings that better suit your situation. Things like flourescent lighting, air conditioning blowing directly on you, constant noise, a bad chair and a host of other things can contribute to your symptoms. Invisible Illness Awareness Week would be a good time to discuss any changes you feel would help you do your job not only easier but better.

Use the week of September 10 – 16, 2012 to help yourself and to help others learn and understand what you go through each day. Don’t think of it as looking for pity, look at it as a teaching opportunity. If you encounter someone who has been recently diagnosed go ahead and ask them if they would like more information and have a list of websites or a packet of articles to give them. If they ask about your own experience don’t be afraid to share. Even old timers want to find out if there’s something different to try. Often the tried methods aren’t so true any longer and maybe something new will work better. And don’t forget to talk to your doctor. Be completely honest about how you feel, your pain level, and your frustration. It’s the only way he or she will be able to help.